Rational behind Experiment
In February we decided to put a claim in with ACC (New Zealand Accident Compensation Corporation) for Derek’s CAPS and subsequent Adrenal Insufficiency as a Treatment Injury.
We received word from ACC in April that they accepted Derek had an Treatment Injury and they would now help out with things we needed help with. This was great news. The first thing we asked for was assistance for Derek to get to work. At the time Derek was getting a lift to work with me, but that meant me leaving the main route, dropping him, and trying to get back in the Peak Flow traffic. This was adding at least ½ an hour to my trip, I was regularly late for work, and Derek was having to leave the house very early.
We were sure that taking the train to work in the winter, was not a good option for Derek as it was too cold, he had a distance to walk both directions, and had to get on and off the train in frost, rain, wind etc because there was no direct train in time for him to get to work.
ACC’s belief was that public transport was the preferred option. This is based on the fact people needing help had normal physical disabilities such as a broken leg, bad back, broken arm. Something that prevented them from driving themselves. If Derek had broken his back, they would adapt his car to give him the freedom he used to have. There was nowhere in the manual that talked about something like Addison’s Disease.
So we decided to do a test for a week to see how Derek would cope taking himself by train to work and from work every day.
Woke up late but fresh. (Had 10/10/5 the previous day)
He reduced his HC to 10/7.5/5 (the max his Endo wanted him taking) and went for a walk twice.
Felt very tired by 7.30. Went to sleep by 9 pm, struggled to stay awake that long.
Woke with alarm. Not as fresh.
Taking train to and from work.
Weather bad, cold, windy, wet.
I received a phone call at 9.45. He had made it to work but sounded very tired. I told him I would call just before 12.00. He was Very cold and had trouble warming up.
Came home and went to bed early.
Woke at 4.00am suffering wind and pain under his ribs. Woke at 6.00am with alarm but more tired than yesterday. Still with wind under ribs. Less energy. Energy reserves reducing daily.
Occupational Health visiting at 9.am today.
Missed train and had to wait on cold station. Got very tired waiting.
Came home very cold and tired.
Still up at 8.30 pm but didn’t do anything. Just sat resting.
Woke more tired than yesterday.
Slightly more gastric upset than 28 May. Symptoms worsening by the day. We are only at day 3 and he is not overly well.
10.00am spoke to him on phone. Sounded very tired. Could not totally focus on conversation. speaking slower, pausing for longer to think of what he wanted to say.
Txt from Derek at 11.20 saying he was hanging out for HC. Normally get a reminder and then realises what the time is.
Woke at 4.00 with wind on rolling over. Blood pressure not dangerous but lower than normal.
Again more tired than previous day.
Message from Derek early in day.
” Train was late this morning. On train now. In sun but squatted. Little light headed on standing. Will have some salted nuts when I get to work”
Picked him up from work for appointment so he felt slightly less tired than previous days.
Suffering Reflux at night.
Could not join me to watch our daughter in a show. Went to bed by 8 pm.
Didn’t want to wake up. Had to force himself to take his meds as he was happier sleeping.
This is the danger time as it could have been just as easy to stay asleep for another hour and every hour he delayed his meds would make him more prone to not taking them.
Still has wind under the diaphragm, slowing progressing downwards.
2 hours after meds he would rather not go to work, feeling dull, tired, focus on 1 thing only, disruptions cause total loss of focus and needs time to refocus. Constant yawning.
We visited the Dr at this point to have his state recorded. His blood pressure was down slightly, he was even more tired and would rather just lay down. Constant yawning, more wind.
The Dr agreed that for this winter at least, while Derek tried to recover from all the organ damage sustained during the CAPS, that a Taxi at least to work in the morning would be a good idea.
On leaving the Dr’s surgery Derek Stressed dosed on 20mg to get him back to the correct level. 1 hour later he was showing signs of “waking up”, and feeling a little better.
This was successful in that we found out Derek Cannot take the train to work on a normal daily dose of HC. And it is not recommended that he keeps his levels of HC high, just to get to work.
We are at a situation where:
Do we push for a Taxi one way
Does Derek take 1 day a week off to recover from taking himself to work for 4 days.
Logic says it would be cheaper for ACC to pay a taxi 1 way 5 days a week, but taking 1 day a week off, with ACC paying sick leave, is an option we will consider putting to them.